The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Along with experiencing the typical emotions every parent has when their kids start school, I've also had to teach my son, Maddox, to take responsibility for his cystic fibrosis.
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Using social media helps me cope with raising a child with cystic fibrosis, but I have to remember that it's not just my story I'm sharing. Here's how I make sure I share the right parts of my son's CF journey.
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Don't let the internet fire hose of CF information overwhelm you. As a mother to two children with cystic fibrosis, I can give you some tips on avoiding common pitfalls.
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After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
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I wrote this poem to my daughter as I watched over her in the hospital.
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Spending summers at sleep-away camp helped me become more responsible, and allowed me to see CF clearly and accept it.
